Understanding the patient experience

We’re on a mission — To help give rare disease patients a voice!

We know that having a rare disease can have a significant impact on a person’s physical, mental and emotional well-being. This is not only a challenge for patients, but for their families and caregivers as well.

The effects of rare diseases may be multi-faceted and vary depending on individual differences and the nature and severity of the disease. Patients often require multi-disciplinary approaches to manage and treat rare diseases. They also need easy access to up-to-date educational resources, strong support groups and psychological counseling, when appropriate.

But rare diseases don’t typically draw public interest. And few people know someone with a rare disease – let alone how to help them. Working with rare disease patient advocates, Rare Insights is here to change that.

Rare disease patient advocates

Rare disease patient advocates are primarily concerned with patient outcomes, focusing on improving quality of life. At Rare Insights we recognize that patient advocates are often volunteers, with diverse backgrounds, experience and skills. Using our Advocacy Strategic Advantage Program (ASAP), which we have designed specifically for rare disease advocates, we are accustomed to working with individuals with varying abilities and interests who can make meaningful contributions to giving rare disease patients a voice.

Patient engagement strategies

At Rare Insights we are able to work with rare disease patient advocates on a variety of engagement strategies:

1. Understanding and articulating the impact of the rare disease & symptom burden on patients, caregivers, and families, as it affects:

  • Daily life
  • Quality of life
  • Physical, social & emotional well being

2. Developing competencies to engage rare disease communities:

  • Building educational support tools
  • Developing patient support programs
  • Leveraging support networks and grant opportunities

3. Developing an advocacy platform that includes:

  • Compelling patient stories
  • Patient charter of rights
  • An articulate statement of unmet needs and impact

Advocacy Strategic Advantage Program (ASAP)

Step 1: Define Objectives

Patient advocates are able to define their objectives and goals.

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Step 2: Develop Strategy

Patient advocates are able to build a basic strategic plan.

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Step 3: Set attainable goals

Patient advocates are able to create an implementation plan, with SMART goals.

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Gail Wright, Founder and President Rare Insights

I am a rare disease patient and a patient advocate. For more than a decade, I have led a national patient support group, with members across Canada. Our group is built on five pillars: Education, Compassionate Support, Research, Advocacy and Awareness. We have developed a strong patient organization including partnerships with clinicians, researchers and industry. We have made effective representations to government agencies, ministries and regulatory bodies to advocate for patients’ rights to treatment options and equal access to care. I created Rare Insights and developed the ASAP methodology because I am passionate about helping other rare disease patients and groups achieve their own objectives.

A Rare Disease Success Story!

In 2001, encouraged by their medical specialist, a group of rare disease patients came together to create a patient support group. By 2003 they had created a registered charity with 200 members. Today the organization has grown to more than 1,400 patients and is recognized internationally as a leading voice in PBC advocacy. The Canadian PBC Society continues to play a dynamic role in changing the PBC landscape internationally, working for better treatment options, greater recognition of symptom burden and increased disease awareness. The society has a wide range of programs and tools, along with local and regional volunteers to support patients throughout their disease journey. Primary Biliary Cholangitis (PBC) is a rare autoimmune liver disease

Have a project you would like to talk about?

We’d welcome the opportunity to share our Rare Insights patient advocacy experiences with you.

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